Telling their story to the world

Pam Hillery noticed soreness for the first time three years ago last month when she was attending Gov. Steve Bullock's inaugural ball.

She thought maybe it was just because she'd been dancing so much.

Doctors went through a list eliminating the possibilities. Lyme disease, multiple sclerosis, one by one the possibilities were scratched off the list.

Finally, doctors got to the last thing they check in such cases - amyotrophic lateral sclerosis, ALS or Lou Gehrig's Disease. It is a muscular disease that weakness, paralysis and eventually respiratory failure and death.

She expected the bad news she got.

She and her husband, Paul Tuss, immediately decided she would not spend her final years as a recluse.

Pam has written newspaper columns, talked in public about her experiences and written Facebook posts detailing her thoughts.

She'd lobbied for state and federal funding for research to fight the dread disease.

She's taken part in marches seeking more funding for ALS projects.

Now, she and Paul have taken another step they hope will stand the test of time.

They have recorded their story on Storycorps, a website that lets people around the nation record stories of their lives that will last for posterity.

A devoted listener of Yellowstone Public Radio, Tuss has enjoyed Storcycorps stories that are featured every Friday on Morning Edition, a news program put on by NPR, formerly National Public Radio..

Tuss said their story is featured on storycorps.org, but has "gone viral" on Facebook and other social media.

"I thought it would be interesting for people to hear," he said of the story.

They basically put the microphone down in front of them and talked for about 20 minutes on their experiences.

ALS has had quite an impact on his life. His mother died from the disease in 2002,

Two in 100,000 people get ALS, Pam said, but she can rattle off the names of a number of Havre people who have gotten the disease in recent years.

Paul said this was a good time to do the recording.

"Pam's voice is beginning to fail," he said.

While her voice is still clear and understandable, by listening to Storycorps, you can understand some of the effects of the disease.

The decision to go public with her disease was one of the first she made after learning of her disease.

"Everybody has a bucket list," she said. "There a little more urgency to mine."

Since she got the bad news, she has gone on a cross-country trip, seen relatives she hasn't seen in up to 40 years, started a blog to keep people informed, gone to a Bruce Springsteen concert and got appointed a vacancy on Havre City Council, where she led a vigorous fight to win approve of a massive program to repair the city's deteriorating streets. She vows to go back to council meetings if council members don't keep up the fight for passage of the proposal.

For most of the time, she has been in a wheelchair. That has slowed her, but not stopped her.

"Everything is possible with a wheelchair," she said. "It just takes longer."

There is still more on the bucket list, she said.

She wants to see her daughter's plan and then her son's play.

"And then I'll want to see their next plays," she said.

Another goal is to see Glacier National Park.

"I'm not going without seeing Glacier," she said.

And an avowed Democrat, she added "I don't want to die without voting for Hillary Clinton."

In an interview with the Havre Daily News and in her discussion with Storycorps, she expressed thoughts about her situation.

Not an inspiration

Pam scoffed at the idea that her public handling of ALS is an inspiration.

"I don't feel like I'm an inspiration," she said. "I'm still old Pam."

But she admitted that many people disagree with her.

One woman told her she had her newspaper column taped to the refrigerator as an inspiration on tough days.

"I just don't want people to think that I want people to feel sorry for me or pity me," she said.

People often ask her if she is having a good day.

The answer is complex, she said.

"With MS, you have good days and bad says," she said. "ALS is progressive. So there are really no good days."

Havre and its people

"If you have to have this disease, Havre is the place to have it," said Pam.

She and Paul moved her in 2002, and quickly became its biggest boosters.

"It's just the right size city," she said. "And the people are tremendous."

She said she goes nowhere where people don't offer to help out in any way they can.

Her family has no good cooks in the best of times, she said. So, when her friends and City Council colleague Terry Lilletvedt offered to get people to help prepare a meal a week, she agreed.

Within days, she had a six-month schedule of people volunteering to help.

"The people in this town are just great," she said.